Tuesday, February 8, 2011

Seeing Red

I'm generally a guy who is very slow to anger. I'm relatively even-tempered, and always try to remind myself that triumph and disaster, as Rudyard Kipling said, are both impostors. The heights of triumph and the valleys of disaster are usually short-lived, and to allow either to trick you into believing that yours is a life that will always be lived in splendor or despair is to have a deluded grasp on reality. I once won over $14,000 in the Florida lottery, and I've seen many of my chosen horses fall short by a nose, both literally and metaphorically. It isn't that I haven't allowed myself to experience the sweetness of conquest, or the bitterness of downfall, but I've long tried to keep things in perspective.

Though I was wildly emotional in my youth, with age has come at least a smidgen of wisdom, and I've learned that a dash of Zen detachment can go quite a long way towards keeping yourself sane and your life on a relatively steady course. Being diagnosed with MS has certainly put my studied grasp on my own emotions to the test, but practiced discipline has helped me to make the many mindbending decisions that are thrust upon patients with chronically debilitating diseases.

Still, there is much about having MS that just plain pisses me off. And not just the fact that I have the disease, which all by itself is a real kick in the ass. But there is a veritable potpourri of reasons to be angry that come parceled with the disease, some of which become apparent only after the blinding smoke from the explosive burst of the initial diagnosis clears, and you get down to the business of day-to-day life with your new and unwanted companion.

Let me start with a favorite target of most MS patients, and one that often seems to go out of its way to earn the bile of those it's supposed to be helping: the medical research establishment in general, and more specifically, the entities that fuel and profit from this woefully dysfunctional beast, the big pharmaceutical companies. To cut directly to the chase, why the hell is so much time and money being spent developing drugs and compounds that do nothing to address the still mysterious cause of MS, but in reality only treat what is essentially a symptom of the disease, a broken immune system. Can we throw a few dollars at finding the cause of this freaking monster? The hideously expensive solutions presented to MS patients don't even have the decency to try to pretend that they're fixing the abnormal immune response that is most likely not the primary culprit behind our creeping paralysis. No, the "Disease Modifying Drugs" modulate naughty immune cells, or suppress them, like a perturbed parent swatting a misbehaving child on the backside and then sending them to stand in the corner.

For the privilege of taking these drugs, the best of which only work in about 65% of those using them, MS patients must overlook the long list of side effects that go with them, starting at the benign end with flulike symptoms, and ending more ominously with the possibility of terrifying brain infections and deadly cancers. Yes, these drugs can improve the quality of life of the percentage of patients they do happen to work on, but that's about as good as it gets. They do absolutely nothing, squat, zippo, to actually cure anything. Instead, they turn the patients into pharmaceutical company clients for life, even if those lives may be shortened by the above-mentioned side effects. What these drugs have been spectacularly successful at doing is enriching the pharmaceutical companies that make them, to the tune of billions of dollars a year. Why cure, when you can treat, and mint money at the same time?

When it comes to medical research, our society has its collective head up its ass. We have extensively trained and credentialed brilliant minds working on cures for baldness and erectile dysfunction while cancer patients are dying, MS patients are becoming crippled, Parkinson's patients are losing control of their bodies, diabetics are going blind and losing limbs, and Alzheimer's patients are watching the very essence of who they are slip away. Granted, being chrome domed and limp schlonged may indeed be upsetting, but sorry, Buster, get to the back of the line. Oh, but wait, I keep forgetting that making money is the goal here, and aging men will go deep into hock for a head full of wavy hair and a phallus that will spring to life at the drop of a pill. Let us not forget, there's also the little fact that most of the occupants of the executive offices of the companies funding our medical research machine can count themselves among the chrome domed and limp schlonged. At least we with serious illnesses can rest assured, secure in the knowledge that those in power have their priorities straight. Making money? Check! Growing hair? Check! Stiffening schlongs? Check! Curing horrible illnesses? Well, that one will have to wait ...

I'm also getting increasingly pissed off at MS neurologists these days. I remain convinced that almost all of them genuinely have the best interests of their patients at heart. They're almost unique in the world of medicine as doctors who have never once cured any of their patients. I've been lucky enough to have met and been treated (unsuccessfully) by some of the best in the business, many of whom are quite literally obsessed with finding some way, any way, to find relief for their patients, but nevertheless they somehow can't stop themselves from denigrating the new kid on the block, CCSVI, and actively stand in the way of research that could confirm or disprove this new vascular theory of MS.

Fine, neurologists have reasons to seriously doubt the validity of the hypothesis, some of which even make sense. There certainly are aspects of the CCSVI hypothesis that contradict known MS Pathology. All the more reason, I should think, for the neurologic community to get fully behind CCSVI research. It seems to me that the quickest way to disprove a theory that they're so sure is completely wrong would be to eagerly team up with vascular physicians to design and put into motion quick and effective trials of CCSVI, thereby settling the question once and for all. By obstinately objecting to such trials, neurologists are not only forcing their desperate patients to seek treatment behind their backs, but they're actually perpetuating the life of a treatment modality that they say has no possible chance of having anything to do with Multiple Sclerosis. No chance? Really? Then prove it.

There are scads of willing MS patients and waiting Interventional Radiologists ready to start large-scale treatment trials that would put all questions to bed. If the trials prove that CCSVI is a crock, the neurologists can pat themselves on the back and do a touchdown dance. If, though, trials prove that CCSVI at least plays some part in the MS disease process and treating it can help patients, then they could also do their touchdown dance, because they'd finally have a radical new way to relieve the suffering of those they treat. Believe me, even should CCSVI prove to be THE cause of MS, there will be plenty of us with nervous systems damaged beyond the ability of CCSVI to help to keep neurologists in business for a long, long time.

I've talked to many of the pioneering CCSVI doctors, and almost every one tells me that they've reached out to the neurologic community to find willing partners, only to be rebuffed at every turn. Hey, neurologists, it's time to put on your big boy pants and step up to the plate. Your patients are demanding it.

As my disease has progressed, and I have become increasingly disabled, I've been handed yet more reasons to be angry. Unlike many other wheelchair users, I haven't encountered too many people who have been discourteous or rude, but here the streets are plagued with zombiefied pedestrians completely consumed with their smart phones and PDAs, to the point where they actually walk right into me and my wheelchair.

Now, this is New York City, and most pedestrians aren't going for arduous, time-consuming, miles long hikes. If they're traveling any significant distance at all, they're very likely either getting into a cab, bus, or subway. Those walking the streets are usually going for quick jaunts of no more than 20 minutes, during which time it seems that it's impossible for them to not stay constantly connected to somebody someplace. What on earth could be so important that they can't actually watch where they're going, join the rest of the world for a few minutes, and wait until they've reached their destinations to reconnect? Instead they are compelled to keep talking and texting while blindly placing one foot in front of the other, oblivious to everything around them. I wonder, do they text, "I JUST WALKED INTO A GUY IN A WHEELCHAIR?" If this doesn't stop soon, some of them are going to need to dial 911 and text, "OMG! SOME LUNATIC IN A WHEELCHAIR JUST SHATTERED BOTH OF MY SHIN BONES."

I'm also peeved at all the shops and restaurants in the city that would be wheelchair accessible if not for the single 1 foot step they have in front of their entryways. Can they not replace these little steps with little ramps, so that I could spend some time and money in their establishments? It wouldn't cost much, and my money is just as green as that of the guy with fully functional legs who just walked into me.

So, what to do with all this anger, bitterness, and resentment that can arise not only from Multiple Sclerosis itself but from the frustrations that go along with it? Well, you can let your anger just sit and fester, like the flesh of a pedestrian stuck to the chassis of my wheelchair, or you can turn it into the energy that it takes to fight this damned disease each and every day. Way back when I was a teenager, The Clash sang, "Let fury have the hour, Anger can be power, You know that you can use it." And use it you can, to educate yourself and become your own best advocate, to power the resolve that this disease will not define you, and to not ever give way to despair. Anger is an energy, and turned inward anger can only do damage to those feeling it, but channeled outward and targeted correctly, anger can be the motivation to annoy the bejeezus out of some people who could really use some annoying…

34 comments:

Alas, I doubt the neurologists are convinced there will be enough patients left to sustain their relationships with Big Pharma. The whole dang system is making an awful lot of money off us... and everyone else with chronic illness or disease.

Anger at the medical profession is old, tired news for me. I was a frail child with asthma and bronchitis. I had years of allergy shots, medications with nasty side effects and hospital emergency trips. A few visits to a TCM practitioner, finding new homes for my cats, and a simple diet change (no dairy) and I longer needed drugs in order to breathe. Simple low cost changes that had a tremendous impact on my life. Years of suffering could have been avoided if only a Dr had said, "Let's try no dairy for a couple of weeks and see what happens.".

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Something that really enrages me - I and my cane are completely invisible. I had someone in a power chair force me into a planter 'cause she wasn't slowing down for anything, doors dropped on me, shopping carts rammed into me, people walk into me as I am getting off elevators, been pushed aside, walked into. That grimace on my face is not pain, it's rage!

Thanks! You're right. The list of frustrations that many of us experience is far too long. We try, sometimes futilely, not to let our anger shroud our lives. But, too many "Duct Tape Days", Pharm shamelesss profiteering, neurologists' self-serving dismissals of the merits of CCSVI, businesses blatantly not complying with ADA inside or outside their walls, insurance companies that take your money and your sanity, and, in general, far too many indifferent and clueless members of the general public who don't understand, care about or even see disabled individuals take their toll. Because some days it's hard to have hope, group scream at 4 p.m.--everyday.

this world was definately not designed for the handicapped. Each day as I get weaker and weaker my world gets smaller and smaller. I get more and more angry but it doesnt seem to turn in to anythign for me other than just taht. plain anger. I have called on tirals all aorund teh world. Aimspro in London, Stem cells in spain, it feels like every one in the rest of teh world is trying. Here at home they arent doing shit!!!!!!!!!!!!!!!!!!!!!!!!!!!!gb

You got my vote! Well observed / deserved kick in the ass all around - research to pharma, neurologists to those (like me) who spend a little too much time feeling sorry for ourselves...At least I'm not Chrome Domed or Limp Shloged!

Well said. Glad someone finally said it. Hope you feel better now - I certainly do.

Here, here brother! Bulls-eye!I've had the unfortunate priviledge of clashing heads with all neurologists that I've come across. Feeding me, with forced emotional sincerity, the same old line of 'I wish I had the magical bullet' yadah, yadah...Innocentally I have adopted the 'anger is energy motto', when channeled outwardly is an asset but unfortunately I sometimes miss the targeted correctly part of the equation. What can I say, my familly are too often the only ones in shooting range.p.s.the bald limpdick comments kind of hurtviva viagra and hats!

Hi Marc, Elyse here. Re trials re CCSVI, check out Dr.Robert Fox @ John Hopkins - it's multi disciplinary with vascular specialists, neurologists, cardiologists. should be done 2012. This is the type of trial you are looking for, yes? Hope u r doing better. i sent u an email. As far as people bumping into you, take a sharp cane out and just beat them on the head when that happens. peace, Elyse

You are the funniest, most articulate angry man I've had the pleasure of reading. If I'm ever in danger of "fester(ing) like the flesh of a pedestrian on the chassis of (your) wheelchair," I will return to the Wheelchair Kamikaze for a good swift kick. Rock on, Marc!

We are many to share this energy, but what can we do ? We can not change this world but we can keep having faith in reliable researchers, they do exist. We have, as you're doing, the duty to put pressure on neurologists, media, politics. We have nothing to loose and are patients. We will succeed in finding a way to escape. We did not loose our time fighting MS,against we know who we are, and what we want.

Love reading your blogs! This one in particular!! I have been ranting and venting since February 2010. Your words are mine and your feelings are mine too! Therefore, all I want to say... I rant a lot in HOPES to piss certain people off. Not that I realized it at the beginning. To me it is liberating and then I move on. We are all in the same boat and we all will have to stir the pot to get action. Carry on!!!

Thanks for once again an article that says so much for us all. You might like to add a photo I found a while back, head up butt searching.http://www.facebook.com/photo.php?fbid=165767170101097&set=a.145531275458020.32987.136531636357984Thanks from NZer1 (Nigel)(CCSVI in NZ)http://www.facebook.com/pages/CCSVI-in-New-Zealand/136531636357984

You raise every good point there is to raise. I wish there was a way we could get an advocacy/activism group together. I heard through the grapevine that Joyce Nelson is retiring. If only we could get a grass roots movement going to get someone in there who actually HAS MS and will know what they're doing to earn that $500000 per year.

SPOT ON MARC! I CONCUR WITH YOUR RANTS 100% I SAY, ALL OF US MS'RS, STOP TAKING CRAB DRUGS IF THEY AREN'T HELPING. MAYBE WHEN BIG PHARM NO LONGER HAS JOE SCHMUCKATOLA BUYING THEIR CRAB DRUGS ($50K SOUND ABT RIGHT?) WELL THEN MAYBE, JUST MAYBE, THEY'LL BEGIN TO TAKE NOTICE. DIAGNOSED 2001, HAVE BEEN ON AVONEX,REBIF,TYSARBI,NOVANTRON & COPAXONE. NOTHING HAS HELPED ME...I AM NOW SPMS. I FOR ONE AM TIRED OF TAKING MEDS THAT DO ABSLUTELY NOTHING TO HELP MY SYMPTOMS. I SEE RED EVERY TIME I TAKE A SHOT & I AM FED UP WITH IT. SOMEONE IS GETTING RICH FROM MY MISERY & I'M NOT GONNA TAKE IT!

There are studies that tie immune system to MS.Sorry, I do not know how to link, but please google "Sarkis Mazmanian" of Caltech.I e-mailed him asking a naive question aboutneurologists subscribing to his theory of attacking MS, never heard from him yet. Anna

I think all the essentials of life (Food, Shelter, Medcine, Water, Electricity), should have no connection to businesses at all. Let companies and corporations f**k around with all the other things in life that need profit to drive development. All the essentials should be the best that they can possibly be.

Now if we could make altruism profitable, that would be a thing....PS:Didn't John Lydon sing "Anger is an energy", in the song 'Rise' by PiL?I could be wrong?....

What has me seeing red right now is the rebranding of Campath as Lemtrada - it's the same drug, just different packaging and of course, different pricing.

In my humble opinion, the possible acquisition of Genzyme by Sanofi-Aventis and the role Lemtrada plays in Genzyme's valuation speaks volumes to the ongoing conflict of interest between the pharmaceutical industry and its customers.

I ask myself... How did we get to a point where the market will bear almost $50,000 for one year's supply of pills? And where will it end?

I would very much like to hear your thoughts on this in your next article.

It was interesting to read your description on how the CRABs/DMDs work because I just described them in a similar way to whoever would listen about 2 weeks ago. My analogy was to compare them to dosing someone with a behavioral problem with a tranquillizer or some other pharmaceutical - the problem is still there, you are just masking it with the drugs.

It pisses me off too that more of a real effort is not made to educate people (all people) about lifestyle/diet/exercise choices that likely have a real impact on whether MS strikes, and help immensely once it does.

I have changed my diet etc. almost 100% in the last 1.5 years since my diagnosis and often declare that, if for no other reason than to cut off the flow of funds from my insurance carrier (I am lucky, they cover my costs) to big pharma (and also to test out my theory that my experiment on myself will do as much or more than the drugs) I would like to just stop with the drugs that, big pharma, admittedly, do not completely know why/how/if they work.

I also have MS, and I share your frustration. I don't want another treatment; I want a cure. I hope you won't dismiss me as a kook, but I'm starting to think a cure is possible. I happen to have a few friends who are researchers, and they have have seen a definite link between gut bacteria and immunity. If your gut is too sterile, you wind up vulnerable to any number of autoimmune diseases. That could be why you don't see MS in the third world. Researchers in Argentina saw that the MS patients infected with parasites did much better than the squeaky clean MS patients like us. There is currently a study in Wisconsin in which MS patients actually imbibe parasites. If those folkds succeed, I'm sure Big Pharma will find some way to charge $1,500 bucks a month for a can of worms. I've written more about this subject, complete with links, in the latest essay on my blog, Ms. Lab Rat, http://www.mslabrat.com/?p=240. Keep up the good work. I'm glad you are out there.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...